December 31, 2008

For Christmas this year we flew up to Nana and Pop Pop's house in Auburn. It was Madeleine's first airplane ride, and she did very well.

Luckily the flight was only just over an hour because she spent the entire time figuring out how things worked. Tray table, up and down, up and down, up and down. Window shade, up and down, up and down, up and down. Arm rest, up and down, up and down, up and down.

When we landed, we picked up Aunt Rebecca and headed to a restaurant for dinner.

The next day, we went up to the snow. This was Madeleine's first experience with snow and she didn't think too much of it. It was cold. Back in the car she screamed at us because her hands were cold.

Her shoes were also totally inadequate.

Over the next couple of days there were many, many presents to be opened. Mad really got the hang of gift unwrapping, and even tried to open other people's presents. Here she is hugging a bear from great Uncle Lorey and Aunt Carm.

Christmas morning it was apparently time to try out some disco moves.

All dressed up in her Christmas outfit (thanks to the hand-me-down from her big "sisters!")

On Christmas day, Grandma and Grandpa N, Uncle Kyle and Aunt Karen also came. We went to the winery to do some tasting.

The day after Christmas there was a party for Ryan, to celebrate his new PhD status. It was great to see so many friends and family, and I can't believe how many of you read this blog!

No word on the scheduling for her surgery yet. I'm sure they will call next week, after the holidays.

It's been a tough year. Definitely the most difficult that we've ever faced, and hopefully this year will go down with that record.

I'm looking forward to 2009 for many reasons:

In 2009 Madeleine will no longer be in treatment, and will be on her way to being deemed, "cancer-free."In 2009 she will have her Hickman line removed and we will begin swim lessons.In 2009 Ryan will officially be a postdoc, and no longer a graduate student. (We are very proud of Dr. Ryan, as he successfully defended his dissertation this month and earned his PhD!).In 2009 we will, hopefully, have enough money to survive unassisted by our very generous families.In 2009 all three of us will have have medical, dental and vision health insurance.In 2009 we are likely to moving somewhere new, depending on where Ryan gets hired.In 2009 Humphrey will behave and no longer chew up Christmas presents (true story), or toys....one can dream, right?

December 18, 2008

The doctors have decided that it would be best if Madeleine has another neurosurgery. That way they will be able to get a biopsy of that part of the tumor, and relieve some of the compression in the spine. Our doctor said that they had multiple tumor board meetings about her and this decision involved the opinions of many people. She also asked if wae wanted to have the surgery in San Diego or L.A. Of course I told her that we would prefer San Diego, unless there was any benefit to having it in L.A.

She had this same surgery (laminectomy) when she was first diagnosed last February. I don't know if this will be exactly the same, or not. She will be hospitalized for a few days afterwards. Dr. M. assumes that this surgery will take place sometime in January. She is now consulting with our doctor here, and the neurosurgeon that will be performing the surgery (the same one she had previously).

We are going to enjoy our Christmas and try not to think too much about the upcoming surgery.

December 16, 2008

We're still waiting to hear from the doctor as to what kind of surgery Mad will be having. I talked to her last week and she said that the surgeons were still debating about the best way to go in (from the spine or the abdomen). I don't think they can get at both tumors from one site, but they don't want to do both,as that would be a huge surgery. Hopefully I'll have some news later today.

p.s. Look carefully in the photos and you'll notice that it is snowing in San Diego!

December 10, 2008

First, I don't understand what is appealing about L.A. I'm sorry if you live there, or you love it there, but I just don't get it. Traffic is horrible. I know San Diego has its bad traffic, but it never seems to be as bad as the traffic in L.A. is. I don't think I could ever get used to that. We were about an hour late to our appointment (luckily they told us to be there an hour before our actual appointment, so it worked out okay), due to the last six miles of the drive. And then parking at the hospital was pathetic. The main lot was full so we were directed to the lot across the street, which of course was also full so we were told that the only option was valet....ugh!

And onto the actual news:We met with Dr. Marachelian who is just about the nicest person ever. She talked to us for about an hour and a half and I got the feeling she would have gladly stayed longer if we needed it. She specializes in Neuroblastoma, and 95% of her patients are NB kids. She didn't come right out and say it, but she is the NB expert in California at least.

Basically she told us what we learned previously from Dr. Kim. That she thinks the tumor is on its way to maturation and the best course is to just wait it out. As the tumor matures the cells move from being neuroblastoma cells to ganglioblastoma cells to ganglioneural cells to neural, or nerve cells. She explained that neuroblastoma responds to chemotherapy and nerve cells do not. The fact that Madeleine's tumor did not respond to the last few courses of chemo could mean that the cells are starting to reach maturity. However, because it is still growing, it is evident that there are still some cells that are differentiating (maturing).

Dr. M meets with the L.A. tumor board tomorrow and they will decide then the best way to proceed. Madeleine will need more surgery, but it could be a biopsy (which I believe is a lot less invasive), or another surgery to debulk the tumor in the spine. In order to proceed with this new plan they need to know the pathology of the tumor. We haven't had any pathology since her surgery in June, which was six months ago. If the pathology comes back as she expects (ganglioblastoma), then we will have her Hickman line removed (yeah!!), and follow the tumor with MRIs every three months. However, if the pathology shows a lot of immature cells than they will have to come up with a new plan.

In case you were wondering, the abnormality on chromosome 11 that I posted about earlier, is NOT an inherited genetic thing. In other words, Ryan and I are not carriers and have about as much of a chance of future children having this disease as the one in a million chance that one child would get it. We've been told this before but it's always a relief to hear it again.

I should hear from Dr. M as to the tumor board's decision by Friday at the latest. The surgery will either be in L.A., or here in San Diego (we vote for here!).

December 9, 2008

First, we made peanut butter chocolate chip cookies. Madeleine stood on a chair and watched everything I did. She even helped squish and poke at the dough. We brought some cookies to daddy, who was working on his thesis in the garage. Madeleine practiced finding her belly button. She can also find her ears, eyes, head, nose, mouth and toes when asked. You have to be careful about asking her to find her belly button, because she will then ask to see yours, sometimes lifting your shirt up to find it if you don't comply fast enough.

Next it was dinner time. Pasta is a favorite, of course. The messier the better.

The best part of the evening is bath time. Mad LOVES her bath. When she's cranky all I have to do is say bath and she is immediately excited. Lately she even says bath ("baff"). Which means that bath is on par with Dada and doggy; the highest honors given. (she also says that, "dat," and again, "gin").

After playing peekaboo with the towel about a hundred times, it's time for pajamas.

And quiet play time before bed.

Tomorrow we head up to LA to meet with the Neuroblastoma specialists. Wish us luck. I'll update when we get back tomorrow afternoon.

December 3, 2008

The highs and lows of dealing with cancer are incredible. Emotional roller coaster does not even come close to what we have been experiencing in the last 10 months.

Monday's news was probably one of the lowest lows. To be told that the stronger chemotherapy was doing nothing, and that we were injecting poison into my baby's body with no effect to the tumor was difficult. The fact that our Oncologist was "concerned" and "surprised" also did not alleviate any fears that I had. It's not good when your Oncologist is concerned. She also started talking about stem cell harvest and bone marrow transplant, in preparation for and as the result of the possible further treatments. All of these things forced that steel box that I keep in my mind to open up a bit and allow the very scary possibilities to come seeping out. Yesterday I had to mentally close that box about a hundred times. I literally imagine shoving those thoughts that begin to manifest themselves into a box and watching the steel sides, top and bottom come closing down over them. I know that this is probably a little dramatic, but it's one of the ways that I deal.

Today is one of the highs. A tentative high, but high nonetheless. The oncologist called and said that after conferring with the doctors in Los Angeles that they (the LA docs) think that we shouldn't be too worried about the growth just yet. They think that we should give the tumor more time to mature. Giving a tumor free reign makes me a little nervous, but these are the experts. Madeleine was initially diagnosed with intermediate risk Neuroblastoma. There are three genetic markers that they look at, and the main two are negative in her case, which puts her in a lower risk group. Also, the fact that her tumor has not spread to other parts of her body is another indicator of her intermediate risk status. The third genetic marker does show that she has an abnormality on chromosome 11. I don't know what any of that means, except that Dr. Kim explained today that it hasn't been proven yet, but many people think that that abnormality makes the tumor more aggressive. In fact, the LA doctors are about to publish a paper on a group of low to intermediate risk patients with a chromosome 11 abnormality. These are the doctors that are telling us to wait it out and see if the tumor can be pushed to maturity on its own. No chemo, no nothing, except for scans and urine checks. They also say no radiation for now, and our radiation consultation is being cancelled.

The LA doctors (I wish I could stop calling them that, but I don't really know their names), want to meet us and have a consultation. Our clinic is currently mailing out all of her tests, scans, etc to them so that they can review her entire file. They are hoping to meet with us next week. the "do nothing" treatment plan is not for sure yet, we need to wait for them to review her file and meet her, but that is their initial assessment.

There is still, as always, a possibility of surgery. One, a biopsy may be performed at some point to assess the maturation of the tumor. Two, a surgery similar to her previous surgeries to debulk the tumor should it get too large, is also a possibility. The part of the tumor that is growing is in the abdomen and Dr. Kim assured us that it has plenty of room to grow and is not near anything that it can damage. The part of the tumor that is in her spine has not grown, and will damage nerves, impact movement, if it does grow.

This is all as I understand it, so I may be missing pieces here and there. As you can imagine I have quite a few questions for the Neuroblastoma specialists, and I am almost weirdly eager to meet them.

So, today is a high. We are, I suppose, cautiously optimistic. We are nowhere near celebrating, but we are feeling a hundred times better than yesterday. One step at a time.

Over Thanksgiving weekend we visited Grandma and Grandpa N in Coarsegold. Since we will (hopefully) be at the other grandparents' house over Christmas, we had a mini Christmas with some larger things that we won't be able to take with us on the plane back to San Diego. Madeleine got a very cool rocking Elephant that she completely loves. However, the box that it came in proved just as much fun, especially when Daddy joined her in it.

The day before Thanksgiving when we were still in San Diego, Madeleine stood up in the middle of the kitchen floor and took two very wobbly unassisted steps! Since then she has sort of been trying to walk, but no major improvements yet. We, of course, are thrilled with that development.

Not so thrilled about the continuing lack of sleep. I was awake from midnight to 3:15am, and then again at 5:30am. And again at 6:30am. Lovely. Of course she sleeps now.

Thank you to everyone for your comments on the last post. No news from any doctors yet about the next treatment plans. We do have a consultation with the radiation (radiology?) doctors at UCSD on Tuesday.

December 1, 2008

We're waiting to hear about next steps. Our doctor is waiting to hear back from a doctor in LA that specializes in experimental neuroblastoma treatments. If we qualify for their treatment, we may be going to LA. Our doctor is also scheduling a consult with the radiation doctors at UCSD. We don't know if radiation will be the next step, but she would like to have the consult anyway.